Family and Caregiver Schizophrenia Discussion Forum

On being a caregiver

Many of us, not all, on this forum are caretakers of our relatives with schizophrenia. No easy task by any means. There are days when this job is physically and emotionally draining, and others when it is rewarding. On those days where I want to tear my hair out, like when I have to hear about my daughter’s many thoughts, or experience her OCD symptoms and need to run the daily errands, I want to retreat and hide. And of course, I ask, why am I doing this.

There are other pros of being a caretaker. I can make sure my daughter is medication compliant, monitor her diabetes, and know where she is most of the time. I take care of her because she is my daughter, I love her, and if I, as a parent feel horrible because of her illness, I can’t imagine how she must feel with the limitations placed in her life by this cruel illness.

What do you do when you are exhausted from caretsking? What do you enjoy from it?

Since I retired, I do take a couple hours a day for myself, exercise classes, the gym, book clubs and yoga, and that helps a lot.


When I’m caregiving, I like knowing that my son is aware that he has people who love him. I don’t like hearing about my son’s delusions 24/7 and that’s when I need to step away. I told him the other day that I needed to step back into my world for a bit and do ‘my’ things. He follow me everywhere so its hard to get anything done but I’m coping. I get the retreat and hide you mentioned.


@holly67, we Can retreat, but not hide for too long you are right to say that our children know we love them. I do not expect appreciation, and that is ok. I would be more worried if my daughter were in an institution.


I wish I could get more breaks. I often cannot even get chores done and I often find myself trying to figure out which one I am going to neglect. I love my granddaughter more than anything AND she has come a long way. Psychosis is mostly under control. Just the anxiety is all consuming. Nothing has helped so far. We tried Paxil with horrible side effects. We are also 'between ’ psychiatrists with one taking her off Paxil but not wanting to start anything new and the new psychiatrist not able to see her until August 20.


FYI, I changed my screen name from alwayshopeful to Cerium since there were too many names with hopeful.

O i, there is no doubt how all consuming this illness is everyday. I tell myself, it is what it is.


I’m now able to look back to times when my son was much worse and recognize the progress he has made, even while not aware of his illness.

I have developed personally, to be able to weather the bad times in a more stable way, trying to carefully judge if he is in a crisis, or whether it is something that will pass and he will get back to a better place without major intervention.

For some reason, I think my son gets some comfort from some damage around him. I think to him it is a representation of him “standing up” to his tormentors. I hate to have broken things around, but I have learned to let some damage stay, that it actually seems to reduce the occurrence of more damage.


Reading these stories warms my heart.


My son has used the phrase “had to stand up to Dad” to explain some of his behaviors.

Going to keep this in mind in regards to damage.

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My son has expressed quite clearly that when he does these thing, it is to give a show of strength.


Hi, I have been a caregiver for my sz son for over 3 years now. I never thought I would have that role. I am his only caregiver, he sees his dad about 1 day every few months. I am so grateful I can watch over him, but I am always worried about what will happen when I can no longer do it. I guess that is a fear for all of us. It is nice to see him smile sometimes and I am glad he feels safe with me. I don t find it overly rewarding to caregive because the sadness can be overwhelming. I am still trying to accept that this happened to him, but always have to remind myself that it could be worse.


I have found the best way to get them off of that subject is to come up with a ridiculous question to try to stop there thought process or at least interrupt it. For example about a week ago we’re doing our nightly walk and she’s talking how everybody is “in on it “ going on and on and all the sudden I turn and look at her and I said wouldn’t it be cool if we could cloud climb instead of cliff climbing? I bet that would be a really soft landing and a really cool view. She immediately started on my new topic. I just find some time soon ridiculous ideas is a great distraction and it gives us both laugh


It is true about looking back to times that the illness was much worse. I used to think progress in the illness meant being the water my daughter used to be. Stability is a gift, really. Today, I accept this fact, and do not try to turn back the clock. I think I too am more at peace with this illness, understanding what I can and can’t do today.


I enjoy being with my daughter, having a real meaningful conversation that wasn’t possible a few years ago. I’m grateful to be part of helping her improve her life. I recover best by being alone and unplugging from people for awhile, to write, read and listen to music and exercise.


Pixelcat, I am thr same way, love reading and exercising, but watch tv too. Lol.

Yes that is my worry , what will happen to him when I’m not here , I completely understand your worry xx


Thanks for starting this thread. For 2.5 years, I had trouble accepting the caregiver “position” and resented being forced into it, while I HAD to do it. However, the better I become (and the more I accept) that I AM a caregiver, the better life goes. My home life is so much calmer when I am not in a whirlwind of worry.

Recently I started taking more care of myself, and stopped all of my “spare” time being consumed by caregiving (and worry, as worry helps nothing). I got my hair colored and cut. I started going out alone to get some “me” time (to get coffee or a restaurant meal). I went shopping (at a thrift store) and got myself a ton of nice “new” clothes for so, so cheap. I took my husband on a “date” (he is her step-father and is putting up with a lot). I am seeing a doctor myself, and a nutritionist, to try and gain more strength and to sleep better. I have faced the fact that I can’t retire, and must (MUST) keep working to try to save to prepare for my eventual “non-existence” and leave a trust to take care of my daughter since her siblings just don’t care… And, from my daughter’s favorite cartoon movie from soooooo long ago “Don’t worry, be happy”. I should next try exercising and a diet to lose this awful weight I’ve packed on while my daughter has been ill (why is that, ugh, weight gain???). And I have stopped trying to turn back the clock, I’ve finally accepted that the past reality will never be the present reality.


At 70, my greatest concern is who will take care of my son, (32), when I’m gone. We have the ssi hearing in the morning. If he can at least have that, the community will probably house him, at least until he goes to jail or kills himself.
He’s been pretty stable since I brought him back home, off the street. My bi-polar sister, who also lives with me. Is actually more difficult to live with lately.
If my son had an advanced, caring and well run institution to live in, one with a daily program that moved patients to forward progress, he might end up having an actual life of some kind, instead of continuous reruns of battlestar gallactica and playing with his cat. That kind of place doesn’t exist
It’s just me, losing ground, until I’m gone.
I do love the rare times we talk and I can make him laugh!


How did your SSI hearing go?

Sigh. I understand your feelings. I turn 62 in two weeks, and feel so much older these days than I did…

I hope you have more laughs with your son. He is almost the same age as my daughter.

Hi OLB, his attorney said went very well, judge pretty much onboard. But she wants one more study by an “expert” to view all docs, no more interview…but a another hearing in JANUARY!!! Son doesn’t need attend, just his lawyer. So we continue to wait on the unending process, and son continues mostly stable and at peace. Thanks for asking, and blessings to you and your daughter.

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